Faith's Mom's Blog

I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip.  At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up.  Lots of fresh powder at Huff Hills  As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more.  As the day approached, she was...

Thanksgiving is of course a time to reflect upon the things for which we are thankful. But like I told Faith the other day, I think we both thank God every day for the blessings he has bestowed upon us.  Each night, we read a scripture together (it's usually one Faith has memorized such as Psalm 23 or John 3:16-21). After our scripture, we recite "Let your light shine before others, that they may see your good deeds and glorify your Father in heaven" (Matthew 5:16). At the end of that verse, we add our little cheer, "Do good deeds! Say nice things! Be kind!"  This little cheer is just a way to remind both of us, that's how God wants us to act every day. Then we pray, which often begins by thanking God for all that He has done for us and then we pray for others. But the other night after prayer time, I asked Faith to tell me some things she was really thankful for. I told her what I was thankful for as well.  This year, we are feeling especially thankful for ...

One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.  For instance, besides CP, some of other Faith’s health issues include: ·          Gastroesophageal reflux disease (GERD) and other digestive issues ·          Scoliosis ·          Bowel and bladder incontinence ·          General anxiety Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming. Faith enjoying a nice fall day On September 23 rd , we ended up in the E...

This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   The very first time Faith ever tried aquatic therapy was 2011 when she was 8 years old. When she got into the pool, she cried during the whole session. But in the following weeks, she came to love getting into the warm water. She most likely realized how good it felt to get into the therapy pool, where her tone decreased and she could feel more relaxed. It became the perfect place to do her arm and leg stretches.  Faith enjoying aquatic therapy when she was younger. Aquatic therapy also gave her a chance to get some good exercise and just have fun. It even helped her get used to swimming pools in general. When she traveled, she loved getting into the little kiddie pool. She also liked to go swimming during the summer.  Unfortunately, the aquatic therapy pool eventually closed so she was no longer...

This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time!  Faith receiving food through an NG tube in the NICU.  Grandma giving Faith a bottle when she was 2 months old.  After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she...

Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!  Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia  (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.  I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.  Faith in the NICU a few days after she was born. After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met al...